The Story

Sparrow Song was born August 16th, 2010 via c-section. She had been diagnosed in the womb with several major heart defects a few months prior: double-inlet left ventricle, transposition of the great vessels and an interrupted aortic arch.

At 4 days old she had her first major heart surgery. Her heart was the size of a walnut. She stayed in the hospital for almost 3 weeks post-op, then we finally were able to bring her home, however she still had an NG (nasal gastric) tube down her nose for feedings because during surgery her vocal chords were damaged and she was left unable to swallow – or make any sounds. I didn't nurse her or feed her with a bottle, we had to feed Sparrow through a syringe, through the tube that went down her nose – for 4 months. She also didn’t cry. Her vocal chords were paralyzed during surgery thus making it impossible to hear her cry. If things weren’t hard enough, Sparrow also came home on oxygen. The repairs done to her heart only helped her to live longer, they didn’t “fix” her heart. We kept our newborn baby alive this way for four months.

December (2010), Sparrow had her second major heart surgery: ”the Glenn”. It went as planned, with only a few set backs post-op, but she recovered quickly. She came home before Christmas, was off oxygen and slowly starting to take milk from a bottle because he vocal chords had healed. After the second surgery, we were told that from here on out she would grow and be a relatively “normal” toddler. Sparrow saw her cardiologist every 6 months, received echo cardiograms (fancy ultrasounds of her heart), and has had normal check-ups with her pediatrician, until she turned 3. We were told that once Sparrow turned 3 (or weighs around 30+ pounds) she will have outgrown the repairs done in Dec. 2010 and will need one final surgery – for the rest of her life. That surgery is Wednesday October 16th, 2013. It's called the Fontan with a fenestration. The procedure will be 4-6 hours long and her recovery will be 2+ weeks in the hospital and then another 2+ weeks bed rest at home.

Since Sparrow was born with her defects she was rejected by all insurance agencies for health insurance. We did manage to get her into a government pool for individuals with special needs. The pool will assist with a fraction of Sparrow's medical bills, but most likely won't cover much. In September 2013, Sparrow had a heart catheter lab to determine that she was indeed a good candidate for the Fontan. She was admitted and dismissed from the hospital all in the same day, but the bill was over $62,000.